Availability and use of web-based interventions for patients with head and neck cancer: a scoping review

Purpose To identify and review the nature, scope and use of web-based interventions for patients with head and neck cancer (HNC). Method A scoping review guided by the methodological framework described by the Joanna Briggs Institute was performed to review empirical studies and websites. Seven electronic databases (CINAHL, Medline, Scopus, Embase, Cochrane, PubMed and PsycInfo) were searched from 2010 to 2020, data extracted and synthesised using thematic analysis. The Google search engine was employed, identifying the first 100 websites, using the search term head and neck cancer. Websites meeting eligibility criteria were assessed using the QUEST analysis tool, and descriptively summarised. Results Thirteen empirical studies and 32 websites were included. As identified by empirical studies, web-based interventions were developed to provide (1) patient information on HNC and related treatments, (2) advice and support during treatment and (3) management strategies promoting adjustment to life with and beyond HNC. The reviewed websites provided minimal information to aid shared decision-making and facilitate preparedness for treatment, with few utilising patient narratives. Web-based interventions for HNC patients were mainly text based and focused on survivorship. Conclusions There is a paucity of theory-based, co-designed web-based interventions using patient narratives. Implications for Cancer Survivors As patients increasingly look to the internet for advice and support, healthcare professionals are in a position to provide high-quality web-based interventions. There is an opportunity to rigorously develop a web-based intervention, containing narratives of peoples’ lives before and after HNC treatment, aiding decision-making, preparedness for treatment and self-management. Supplementary Information The online version contains supplementary material available at 10.1007/s11764-022-01168-1.

2 impact individual's quality of life (QOL) (Semple & Killough 2014). Head and neck cancers (HNC) are classified into the following subsites: oral cavity, oropharynx, hypopharynx, larynx, sinonasal tract, and nasopharynx (Hakim et al., 2011). The choice of treatment is dependent on the location and stage of the tumour. Current treatment modalities with curative intent are surgery, chemotherapy and radiotherapy or a combination approach (Hinni et al., 2012). The impact of surgery on oral function varies hugely depending on the subsite and proportion of the oral cavity being resected, and consequently effects social, work and personal relationships, which influences post-treatment quality of life (QOL) (Semple et al 2019).
Clinical teams can face ethical, emotional and practical challenges when endeavouring to convey realistic and relevant views on the side-effects and outcomes of the different surgical procedures available for the management of cancer to the head and neck area. Provision of this information is paramount, to promote shared decision-making.
In an era were cancer survival rates are improving, therefore more people living with the effects of HNC and its treatment, to include physical and psychosocial disruption and a diminished sense of self, it is increasingly important that patients receive person-centred care, support and stratified information relevant to their condition (Parahoo et al 2019, Semple et al 2019. The wellbeing of people with HNC and their families is often interdependent and carers also report the need for accurate and representative information and guidance. People with HNC and their families express a desire and a need for tangible and appropriate, patient-centred resources to include the long-term lived experience following treatment. They find it difficult to imagine life after treatment and value opportunities to learn how others coped when confronted with a similar situation (Semple et al 2019). Patientcentred information and patient experiences narratives have a key role in facilitating coping and adaptation, promoting satisfaction with the delivery of care. Patient experience narratives are recognised as central to UK health policy and have an important role in supporting decision making and improving health (Seale 2016). Despite the increased accessibility of the internet to most patients, there are few evidence-based web-based interventions available with patient-centred information and patient experience narratives for individuals with HNC. If available, this could help aid decision-making and preparedness for potentially life-altering surgery. Furthermore, the quality of existing websites available to patients and their families with oral cancer are rarely subjected to quality assurance, are clinician-focused rather than patient-focussed, provide limited information on the long-term consequences and have little information on post-treatment QOL. The available online resources have also a relatively high average reading age making them inaccessible to many of those with HNC, due to a high preponderance of people with poor literacy levels from lower socio-economic backgrounds.

Review question/s (i)
What web-based interventions are available for patients with head and neck cancer to aid preparedness for, and the consequences of treatment? (ii) How do patients use web-based interventions to aid preparedness for, and consequences of head and neck cancer treatment?

Population
This scoping review will consider (a) all research studies that include patients 18 years and over, undergoing treatment for head & neck cancer, that describe web-based interventions for this population. For the purpose of this review, the operation definition of interventions is: a primarily self-guided intervention program that is executed by means of a prescriptive online program operated through a website (Barak et al. 2009)

or evaluations of websites as sources of health information for patients
The studies must be in the English language, full text and published between 2000-2020. (b) The first 100 unique websites related to head and neck cancer, accessible through one search engine.

Concept
This review will include primary research studies and web-sites that describe web-based interventions designed for HNC patients. The web-based interventions must include some specific content for HNC patients. There are no limitations on the type of intervention or its duration as it is not the purpose of this review to examine the interventions themselves.

Context
The review will consider (a) primary research studies related to web-based interventions for HNC patients (b) free, open access web-based interventions available to patients with HNC. The review will not be limited to any specific setting and there will be no geographic limitations.

Types of sources
The review will consider qualitative, quantitative and mixed methods studies. Qualitative studies may include, but not be limited to phenomenology, grounded theory, ethnography, qualitative description, action research. Quantitative studies may include, but not be limited to experimental and intervention study designs, such as randomized and nonrandomized controlled trials). Mixed methods studies may include, but not be limited to surveys, metric measurement and descriptive analysis.

Methods
Initial search strategy to elicit if any previous reviews have been conducted in this field of interest An initial search using the search terms Web-based interventions AND ( head and neck cancer or oral cancer or oropharyngeal cancer ) AND ( scoping review OR scoping studies OR systematic review OR literature review ) across the same databases planned for the full scoping review revealed no such studies. In addition the Cochrane Database of Systematic Reviews and PORSPERO were searched using the search term head and neck cancer and the Joanna Briggs Institute Systematic Review Register was searched using the term cancer when the term head and neck cancer elicited no reviews. No reviews related to web-based interventions for this patient population were found. This suggests that such a review is timely, in light of the increasing development of web-based interventions in this patient population.

Study selection
Having demonstrated the current lack of rigorously developed and accessible web-based interventions containing narratives of peoples' lives before and after treatment for HNC, the inclusion/ exclusion criteria were developed to focus on web-based resources for this specific group of patients. The guidance issued by the Joanna Briggs Institute for conducting and reporting a Scoping Review will be followed and the updated guidance from the PRISMA group (Tricco et al 2018) will be used to illustrate screening and selection of the peer-reviewed papers.

Data extraction
Data will be extracted using the extraction tool illustrated in Appendix II. of the Protocol. This data will be reviewed by both authors to achieve consensus. The extracted data will include specific details on the author, year of publication, the design of the study, the reported outcomes and the decision on inclusion/exclusion in the final review as agreed by both reviewers.

Data presentation
The final set of relevant papers will be presented in tabular form using the data presentation tool illustrated in Appendix III of the Protocol. This tool will include commentary on how the results relate to the research questions. A narrative summary will accompany the tabulated results aligned to the objective/questions of this review. Partners appreciated the intervention, however, they also expressed ambivalent feelings towards peer support, the content of the feedback of their counselor, and the 'tunneled' structure of the intervention.
Exclude. No involvement of HNC patients.